KrabbeConnect
Non-profit OrganizationsMinnesota, United States2-10 Employees
KrabbeConnect is a nonprofit organization focused on Krabbe disease, aiming to provide comprehensive information and access to resources for patients and their families. The group emphasizes bridging science and patient knowledge to support state-of-the-art research and improve patient care, education, and involvement in the research community through a multi-center, patient-centered care model. Its efforts include developing an industry-standard patient registry, sharing institute data, and creating educational materials and continuing education opportunities, while linking patients with clinical trial opportunities. Based in Rosemount, Minnesota, the organization operates with a small team and pursues a vision of earlier diagnosis and advanced care that enables patients to live lives free of disease. The initiative positions itself within the broader nonprofit and disease research landscape by coordinating with patients, caregivers, and researchers to voice patient needs and advance treatment standards.
1-888-653-2347 
support@leadiq.com 
